I was just diagnosed less than a week ago (Friday 2/8/2013) and before that even I had already gotten a call from my neurologist saying that we are going to be meeting with a neurosurgeon on my next visit. Is it common for things to move this fast or is this different? He told me that the herniation was 5mm and I've worked with other CM1 patients post-op but this is a strange change of place for me. I've been on pain meds and just about everything else to try and manage the pain for close to a year and this is a huge jump and needless to say, I'm scared s***less at this point.
Its normal to be scared if you’ve been taking pain meds for ages and there not helping go into ur consult with an open mind and write all ur questions down before hand to take with you. Also bring someone with u so they uv got a second pair of ears… If hungry will stop the pain and get u off ur med give it some serious thought.
Sorry ment surgery lol
Hey Steven,
I can understand your fear..BUT...it sounds to me like your NL has some knowledge of CM as he is sending you to a NS...That is a good thing!
When is your appt with the NS???
My herniation was 5mm-6mm..which is ot considered large at all...however, one can have tons of symptoms with only a say 3mm herniation and the next person has a herniation of say 10mm and is asymptomatic! go figure.
Have you had a CINE MRI yet? This is a test to see how your CSF is flowing.....My NS is the one that ordered that one..let us know how it goes..Hang in there!
hello steven. my name is mike and i have been taking care of my fiancee who has cm1 and has had the surgery. she went misdiagnosed for almost ten years. although from the time she was finally diagnosed to the time she had surgery was ten days. i can understand your apprehension about the surgery. my fiancee had a ten millimeter herniation. best of luck.
LOL, I would consider yourself lucky. So many people are told the Chiari isn't even causing their problems. Remember, the surgery decision is yours to make. You do not have to do anything until you are ready for it.
For me, things went very quickly. I was diagnosed in mid July and had surgery in late August. (2009) In some ways, I am glad I didn't have to wait and wait and wait for surgery. If you are going to have it done, the anticipation gives you time to think too much lol.
Good luck with your consult Steven, I hope the doctor can reassure you and you feel comfortable with their advice.
It’s believed to be congenital in most cases, but an injury can do it too
I went to my neurologist and was referred to a neurosurgeon with surgery scheduled as soon as insurance approves it. I had no clue what Chiari was. I was lucky I had a craniotomy which requires me to have a MRI every year that is how mines was detected. I was told it was a 6mm but he neurosurgeon says it looks more like a 8mm whatever I just want this all done and over with. LOL I know it will never be over with but wishful thinking. I am on Topamax never really been on pain meds not a fan of them. I just suffer through the pain and I patiently wait for the surgery. Best of luck!!!